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Author: bodybybrca

I can’t believe I didn’t share my good news here. I found out last week that my biopsy came back benign! I’m still waiting for my copy of the pathology report to see exactly what it was that the MRI picked up…but whatever it was it’s officially not cancer and not suspicious!

With the clear biopsy result, I’ve officially been given a clean bill of health for now. While I’m trying to take a little time to bask in this knowledge and breathe a giant sigh of relief, it’s hard not to fast forward to thinking about next steps.

On Wednesday I had an MRI-guided core needle biopsy of the small breast lesion that was found on my screening MRI a couple weeks ago. They told me that I would have my results in 3-5 business days, so most likely I’ll hear early next week…although they did say I could hear as early as this afternoon.

Surprisingly, I’m actually less anxious waiting for this result than I was waiting for my initial MRI result. I attribute this to my amazing breast surgeon who really put me at ease. I know there is only about a 10-30% chance that the lesion is cancerous (or to phrase it in glass-half-full way a 70-90% chance it’s benign), and my doctor reassured me that even in the worst case scenario, it’s a tiny lesion and probably very treatable. So overall I’m feeling pretty damn optimistic.

However, waiting for any sort of big news is hard. And waiting to find out if you have cancer? A little extra hard.

So I’m trying my utmost to not sit here wringing my hands and waiting for the phone. In other words I’m trying to entertain myself with some positive distractions. Here are a handful:

When things in my life are relatively sane and stable, I’m pretty damn good at taking care of myself. I exercise regularly, cook nourishing food, connect with friends and family, and spend time enriching my life with music, literature, etc.

And I believe deeply in the importance of self-care and self-compassion.

However, when things in my life are stressful and overwhelming (as they are now) rather than dialing up and prioritizing self-care (like I probably should), it gets chucked in the back seat. My healthy home-cooked meals get traded in for ice cream dinners. My workouts get wimpier as I struggle to find the energy to push myself. And I crash on the couch after work and zone out rather then engaging in something more soul-filling.

I’ve had needles stuck into my veins twice, wands inserted into my vagina twice, been face down inside a giant magnet, and had 2 doctors casually mention that if we’re hoping to have another baby we should do it ASAP (tick tick tick) because my ovaries should undoubtedly come out within the next 1.5 years.

That’s seems like an awful lot for someone who isn’t “sick”.

Transvaginal ultrasound results were normal…follicular cysts, but nothing suspicious. CA-125 result was 13. Also “normal”.

And now I’m sitting here, my stomach in knots, waiting for hear about my MRI.

There’s something about the specific flavor of helplessness I feel when dealing with bureaucracy that really really gets to me. It’s the sense that some corporate interest or bottom line is more important than real people with real problems. When I sit with this emotion I feel electrified with a messy conglomeration of rage and despair.

Dealing with the American health care system (which I will be doing a lot of in the coming months) is a prime example of this helplessness.

Case in point:

Everyone I’ve spoken to from doctors, to the genetic counselor, to friends, other BRCA+ women acknowledge that a breast MRI is the best screening tool for someone in this situation. And like any other reasonable human being I would like the test that has the best possible chance of detecting something (if there is anything to be detected). So I called up my local hospital and scheduled a breast MRI. Easy enough. Oh, and they told me I’d need a referral. That shouldn’t be a problem right? I mean I’m a woman in her mid-30s, BRCA1+, and I’ve never had a breast screening before. Wouldn’t my doctors advocate for me to get the best possible care?

I am lousy at breaking news to people…even good news. When I was pregnant with my son I personally told a total of about 4 people before the impersonal mass announcement on Facebook (which I made my spouse do, and then just shared on my own page).

I’ve done some thinking about why this is, and the best I can come up with is that I don’t like being the center of attention (with one notable exception: when I’m performing) and I love to avoid difficult conversations about myself and my feelings.

If you’re here and reading this, there’s a good chance you know something about BRCA (or alternatively you know me and are here in solidarity. Thanks!). Before last week I knew “something” about BRCA too. But I’m one of those people who find comfort in knowledge and counter anxiety with endless information gathering. So just to get us all (Us all? I might just be talking into the void here) on the same page I’m going to share some BRCA basics.